So, hey, here we are again.
The purpose of this chronicle is to share what I learn with others, in the hope that it might be useful – that’s the function of a large part of this blog, in fact – but the learning curve is showing no signs of levelling out so far, so I’m back.
NB: For new readers, some of what follows you might have read previously, but as not everyone reads every post there will inevitably be some duplication for the sake of clarity and completeness.
With the benefit of that wonderful thing, hindsight, I am now reasonably confident that I have never had ME, but have had low-grade Addison’s – adrenal glands that have failed slowly over the years but, as I’ve mentioned, they’ve been bolstered by a steady intake of steroids, so it’s not been noticed, or become critical until, in 2012, I reduced my steroid intake and slipped into full-blown Addison’s.
That does depend – hence the hedging of my bet with “reasonably confident” – on whether Addison’s can, in fact, rumble along undetected (because no-one looked for it), until I almost died as a result of anorexia (previously just referred to as starvation, but as an Addison’s symptom, it’s listed as anorexia), in 2013, almost exactly a year ago.
There seems to be little available (as in free**), research into that aspect, but what I have found suggests that it is possible for it to go undetected for years, although my timescale – I developed the first symptoms, extreme muscle pain, nausea, and weakness, in the autumn of 1985 – is a tad lengthy. But, then, my steroid intake probably delayed the eventual meltdown.
** Subscribing to medical journals is ferociously expensive, the excellent New England Journal of Medicine, for example, costs £90-ish (depends on the exchange rate), a year for the online version. However, the multi-state-wide Mayo Clinic organisation, in the US, maintains an excellent free database. This is the Addison’s link – printable version. Johns Hopkins, in Baltimore, isn’t bad, either – this is their Addison’s page – though the Mayo is more comprehensive.
Anyway, unless I come up with any information that disproves that theory, then I’m sticking with it, not least because it explains so much that happened to me, during that period, that I ascribed to ME simply because there was no better explanation – now there is.
By the way, if you think I’m wrong, show me the evidence, please. Just telling me I’m wrong won’t get your comment published.
I did, as you’ll know if you’re following this saga, take my GP to task for failing to comply with the guidelines and prescribe ample hydro (an extra 30 tabs a month is risible when the recommendation is six months supply). This problem appears to be approaching crisis point as I am showing symptoms of low hydro levels, as this extract from the Addison’s Owner’s Manual shows (bold indicates what I’m experiencing today):-
Experiences associated with low levels of cortisol (Why do I feel lousy at certain times of the day? )
vi. Low blood sugar and the insulin response(I have a test kit – 5.4mmol/L this morning – within the normal range at 09.15; I last ate at 02.15, an insomnia-busting snack)
vii. Salt and other cravings
viii. Feeling very thirsty
ix. Dry skin
x. Extra pigmentation
xi. Exhaustion and ‘hitting the wall’
xii. Nausea and vertigo
And I’m permanently hungry (could be the hydro), or maybe it comes under “other cravings”. Dunno.
Based on the above, I need to take more hydro**. I also need to take antibiotics to treat a COPD flare-up (purulent sputum, bleeding lungs), but to do that I need to be able to double my hydro dose for the duration (source: NICE – Intercurrent illness – adjustment of steroid dose), but I don’t have enough, nor do I know if my GP will prescribe adequately if I take what I do have and re-order early. I have my own supply on order but they’re in transit.
I have offered to copy the record of my hydro consumption to my GP, but if I have to pay for my own then screw him, he no longer has any reasonable expectation of co-operation from me. Co-operation works both ways.
**Hydro was originally prescribed when I’d lost around 35kg as a result of anorexia. Now, slightly overweight (again!)
The nurses dropped off a sputum sample at the surgery last Monday – I would normally have expected a prescription for antibiotics by now but it’s failed to materialise so I shall start a course of my own today.
I do not have sufficient hydro to double my dose. I have no idea what the consequences of that will be but, if there are any adverse effects, I intend to hold my GP personally responsible.
I would normally treat a flare-up myself, as I can knock it down in 3-4 days or fewer (I can identify an infection perhaps a week before a doctor could, from the taste and smell of my sputum (whereas a GP would listen to the noises from my lungs, which don’t show up until the infection is well established. And then he’d insist on a sputum test (he’s happy to comply with NICE then, so I can spend another week getting worse, waiting for the results, but not in the case of Addison’s – WTF is that about?)
Anyway, I’ve just taken 1g of Amoxycillin, which will be repeated every 8 hours for as long as it takes. As this infection is now well established, both from waiting for more hydro and also for the test results, getting rid of it could take a couple of weeks. If antibiotics do materialise from my GP I can be sure of 2 things – both the quantity and the strength will almost certainly be inadequate. They always are.
No, I don’t have diabetes, and I’d like to keep it that way. However, for most of my adult life I’ve been on the receiving end of dire warnings that taking steroids and diuretics together will tip me into diabetes – and for the past year I’ve been taking both. In addition Addison’s can cause diabetes.
It makes sense, then, to monitor my blood glucose at least daily, and more frequently if my eating habits change (on the rare occasions I go out to lunch, for example, and maybe have a couple of pints too). That would be very much more than what I normally have for lunch, which is either nothing or a 250g tub of cottage cheese.
I’ve had a conventional blood-testing kit for a while, now, but I thought it time to upgrade to something better, since it’s going to be in daily use.
So I ordered one of these, from Boots.
The new version doesn’t use test strips, which means it’s less bulky to carry and it’s slightly cheaper to run, too (in theory test strips are on prescription, but they’re at the GP’s discretion for pre-diabetics and Type 2 diabetics and as I can’t even get potentially life-saving hydro from mine, there’s no chance of test strips or, in this case, the cassette that replaces the strips, so that’s £28 every 50 tests). It also runs on AAA batteries, a useful bonus
But my main gripe is with Boots, as they have a talent for pissing me off (yes, yes, I know that’s not hard – if you were me you’d be short-tempered, too!). Every order I place (and, I assume, everyone else’s), gets this message:-
“Before your order is confirmed and accepted it is subject to further validation checks. Once we have carried out these checks we will send you an order confirmation email.”
What bloody validation? They’ve already checked with my bank that I’m good for the money, and they’d debit my account prior to dispatch anyway, so what possible validation is needed? And who provides it? What shadowy organisation is poking its nose into the lives of Boots’ customers?
I think we have a right to know.